"Life in Status Epilepticus or What to Do When You Think You’re A Jellyfish"
One day she awoke in her room
And discovered she had become
Her tentacles retracted
Her body shrunk
And she sunk to the ocean floor
She had neither a brain, nor a heart
And she realized she was a butterfly
Who had reverted to its cocoon
Who had crawled back inside its egg
She had become a blueprint
Humans would try to use without success
To potentially cycle indefinitely
Between baby and maturity
Maturity and baby
But she realized regeneration
Was a pendulum between
Good death and bad death
Bad death was to lose fertility
Good death was to accept
Damaged crops and replant
But what could she do as a jellyfish?
A jellyfish had no hands to hold
No legs to chase
No lips to kiss a lover
No time to waste
What is the point of living with no love to give?
No thoughts to share?
No lungs to breathe?
One day she awoke in her room
And realized she would never die
Her tentacles retracted
Her body shrunk
She sunk to the ocean floor
And never came up for air.
‘The Jellyfish’ – Claire Fitzpatrick, 2017
In 1894 Phineas Gage, a railroad worker, changed the study of neuroscience forever. His job was to clear rocks for railway tracks, however, one day his iron rod – which he used to tamp down explosives before lighting the fuse – scraped the side of a pile of rocks, igniting a spark which set off the gunpowder prematurely. The explosion sent the iron rod straight through his left eye, into his skull, through the back of his head, and out to the ground almost thirty meters away. Miraculously, Phineas survived, yet became unreliable, partial to swearing and inappropriate remarks. Because of the sustained damage to his frontal lobe, Phineas developed epilepsy as well as witzelsucht, a neurological condition characterized by the impulsive and often uncontrollable desire to tell jokes, puns, and pointless stories. In 1860, at the age of 36, he died ‘in status epilepticus,’ described as a single seizure which lasts more than five minutes, or two or more seizures within a five-minute period without the person returning to cognitive normality between them.
I have had epilepsy for fifteen years.
Sometimes, I’m not entirely convinced I’m human. I know I am made of flesh and blood. I know I have a heartbeat. But I am unsure of what that means. People with temporal lobe epilepsy manifest depression, anxiety, neuroticism, and social limitations, as well as impaired memory. They are conscientious, obsessive, and prone to overthinking. Depending on the type of epilepsy they have, they cannot become railroad workers. They cannot operate heavy machinery. I have been told I will never drive, since I have focal seizures, absence seizures, myoclonic seizures, as well as tonic-clonic seizures. I may inadvertently kill someone. It’s hard to describe feeling out of control, since I am not always sure I feel anything. Neurologists tell me to seize the day – ha ha! – but I can’t always remember what day it is. Neurologists tell me detachment is natural, but I shouldn’t make jokes about depersonalization. Neurologists tell me déjà vu is to be expected, but I can’t remember if I already left the house. Neurologists tell me I should socialize, but the external world lacks vividness. People say you should get rid of things you don’t want, but I can’t get rid of my own brain.
My friend Blue thinks ‘M Butterfly’ should be the last work of stage acting he does. We have known each other for twelve years. He, too, has epilepsy.
“Really, whenever I’ve done a theater performance, I’ve been taking a huge risk. Not only in terms of my own health but the production itself; amateur theater generally can't afford understudies. I don't know what would happen if I collapsed in the middle of a performance on stage. I justified it to myself mostly just with the rationalization I really loved to do it and it hasn’t happened in ages - but recently I had a seizure during rehearsals again. I see how foolish that mode of thinking is.
“I’m just feeling depressed,” Blue elaborates. “After three years without a seizure, I guess I got complacent and I just wish I could be ‘normal.’ It’s thrown my confidence in the play a bit... that, and the fact that one of the other actors recently just broke up with a friend of mine and wants me to take sides. I’ll pull through though... I’m just feeling bitter cause I thought doing this show would be easier than the others and this time moving to a new house would be easier but there’s always some challenges you don’t foresee.”
I, too, used to perform on stage. For over two years, I was part of Velvet Helmet, an experimental theater group of underground fringe acts including burlesque, spoken word, comedy, circus, and theater in an event reminiscent of 1930 Berlin kabarett. I enjoyed being able to transform into someone different, something different. Last year, my friend Yellow committed suicide. She was the creator and producer of Velvet Helmet. I haven’t performed on stage since her death, yet when I hear of Blue’s accomplishments, I think to myself: perhaps I should try again? Perhaps I should get back up there? What would Yellow want me to do? But I so often feel out of place in society. I feel foolish for thinking I should keep trying to reinvent myself. How can a jellyfish cover themselves in fake blood and reimagine Carolee Schneemann’s “Interior Scroll" like I once did? I don’t think I’m that person any more.
In 1980, at the age of 23, Ian Curtis committed suicide. The lead singer and lyricist of post-punk band Joy Division, his onstage performance was often likened to his frequent epileptic spasms. In an article for The Guardian, Peter Hook, bassist and co-founder of Joy Division and New Order, describes a seizure Ian suffered during a recording session. “I went in the toilet and there he was spark out on the floor – he’d had a fit and split his head open on the sink. There were a lot of occasions like that.” In a magazine article, Curtis’ decision to take his own life, ‘giving up on his young wife and child,’ is viewed as incredibly selfish. “It was a permanent solution to a temporary problem,” said Hook. However, I can sympathize with Curtis. ‘Recent publications raise concerns of under-recognition and undertreatment of psychopathology among patients with epilepsy in general and, in particular, of affective disorders.’ It is difficult to explain how Epilepsy alters your perception of the world. Even though there is a close association with epilepsy and psychiatric disorders, Epilepsy is often seen as not as a similarly big deal as disorders such as borderline personality disorder. But there have been certain occasions when the thought of giving up has crossed my mind.
I often think of seizures as a form of transformation. I know I’m not really a jellyfish, but that doesn’t mean I’m just a person. It doesn’t mean I’m just a mother. I can’t imagine so-called ‘giving up’ on my child like Ian Curtis. Jellyfish transition between two different body forms throughout their lives – the polyp and the medusa. The medusa is the most recognizable form. It looks like an upside-down bell with tentacles hanging down from the inside. As the jellyfish reaches the medusa stage during maturity, it grows mouth and tentacles above, like a sea anemone. I often think of myself stuck within the medusa stage, unable to become a polyp. I am rarely employed, since my inability to drive a car is ‘unreliable.’ When I was 18, I worked in a bookshop, but was fired because my reliance on public transport meant I was always three minutes late to work. Recently, my former partner’s mother suggested I move to Broome for a journalism job without my daughter after I suggested the advertised position would be perfect for me if I lived closer. She would take care of her because she is more reliable than I am. She has a car and I don’t. She knows I will never become the medusa. I will never transition out of my epileptic state.
Blue understands growing older and becoming more unemployable. This year, I will be 26, the same age he was when we first met. I was 15 at the time, and we bonded over our mutual love of Isobelle Carmody’s ‘The Obernetyn Chronicles,’ and the fact we were the only people either of us knew who had epilepsy. I don’t know if Blue thinks he’s a jellyfish like me. But I’m curious to know if he thinks he’s a human being. I’m afraid to ask, since the mere questioning of my dissociation with my own species seems just as terrifying as not being human at all. I think that’s why I try and invent myself every few years to remind myself I am human.
Recently, I visited Blue in Adelaide to see him perform in ‘M Butterfly,’ inspired by Giacomo Puccini’s opera ‘Madame Butterfly.’ On the last day of my visit, I went to his house and we watched the film ‘Labyrinth.’ For the first time in twelve years, we kissed.
Blue has a peculiar voice. He sounds very British. While the 2007 biopic ‘Control’ already exists, I think Blue would make an excellent Ian Curtis. However, Blue always looks slightly sinister, as though contemplating his life as a praying mantis. If I were to become an animal, it would be a raven. Odin’s ravens, Hugin and Munin sit on the shoulders of Odin, whispering all the news they see and hear in his ear. He sends them out in the morning to fly around the whole world so he can find out what has changed since the day before. I wish I had the ability to fly. Then I wouldn’t feel so inadequate about being unable to drive a car.
I think Blue would make an excellent butterfly. He, too, longs to fly.
My daughter will be five in November. I fell pregnant in 2012 when I was 21 after a complication between my anticonvulsants and contraception. As a teenager, I used to make jokes about people falling pregnant while on the pill. Now I make jokes about how it happened to me.
Isobelle detests walking and complains about waiting for the bus. Mummy can’t drive a car. Mummy forgets to pack things in her school bag. But mummy can read bedtime stories without having to look at the book. Whenever I am hospitalized after a particularly severe seizure, I tend to sleep for the duration of my admission, however I like telling Isobelle stories when she and her father come to visit. “Mummy, you’re sick,” she says. “You’re not allowed home in a car.” “That’s right, I reply. But let me tell you about ‘Captain Underpants’ and his amazing medical adventure.”
I have good and bad days. Most of the time, I tell people jokes, and I’m generally in good spirits. Other times I look at Isobelle and cry. When she asks me what’s wrong, I tell her my eyes are itchy, and thousands of bugs will crawl out of my face and eat her up. She laughs and tells me I’m silly. “Bugs live in the ground, Claire. Don’t you know that?” I smile. I don’t mind she doesn’t always call me ‘mum.’ When she refers to me as ‘Claire’ and holds my face with her two little hands to kiss my forehead I know she understands me more than I can ever understand myself. To her, I’m not a jellyfish. I am simply her mother.
Following the suicide of Ian Curtis, the remaining members of Joy Division reformed and became New Order. In the 1980s, the band rarely gave interviews, but grew highly successful. While I like New Order, I feel connected to Joy Division. I feel an affinity with Curtis. Watching over old videos of him performing, I understand his frustration, the rigidity of his movements. I understand his maniacal outbursts. Seizures entomb you. While you can see and hear what is going on around you, you cannot communicate with others, and are trapped in your hollowed-out shell of a body, struggling desperately to pull yourself out. Seizures feel like drowning – a silent cry to a hand that cannot break the water’s surface to pull you out. I understand why Curtis chose to stay underwater.
In an interview with Uncut, Bernard Summer, Joy Division lead guitarist and New Order singer and lyricist, said “I guess everybody’s got two aspects of their personality, at least, and the music reflected the other aspect of everyone’s personality. With Ian, there were…two agendas going on, but I can only really say that with hindsight, because at the time the only clue to his darker side were his lyrics. And we never listened to his lyrics.”
My friend Red has dissociative identity disorder (DID). I think he is one of the least crazy people I have met. ‘Epilepsy and dissociative identity disorder share a number of common dissociative symptoms that include amnesia, fugue, depersonalization, derealization, and identity change.’ Generally, dissociative symptoms due to epilepsy or other biological causes tend to be transient, and ‘almost never involve the more elaborate and enduring sense of personal identity seen in the personality states of DID.’ I don’t think this is entirely true.
Red is remarkably gifted in the most interesting ways. For a decade, he was a puppeteer, and later became an author, comic book artist, and special FX makeup artist. During one of our many long chats, Red explained to me how it felt to have DID, which I instantly connected with, as it was like the way I felt about myself. He told me he had always had distinctive identities clashing against each other, which resulted in homelessness when he was younger. He told me he felt separated from society, as though he was simply an observer looking through a glass, darkly. While I recognize the differences between epilepsy and DID, I also recognize our similarities. I, too, feel like I view the world through a different colored lens.
Red and I love horror movies and share a passion for body horror. “My second favorite form of horror is probably Cronenberg’s stuff, and films such as Lynch’s ‘Erazerhead,’ Japanese film ‘Uzmaki,’ ‘Body Melt,’ and body horror comedies like ‘Freaked,’” says Red, “and I think it’s because I have an identity crisis. I think people see that kind of horror and think ‘well that was weird! That was freaky, wasn’t it?’ Like in ‘Society, ‘to see that guy go into his parent’s bedroom and there’s his parents and his sister naked and not be able to tell the leg from the arms or whose body is what. It’s like they’ve all just turned into melted cheese. I find it quite psychologically fascinating because at the back of my brain it raises those questions of identity straight away: are you the monster because you don’t look like them, or are they the monsters because they don’t look like you? I’m not doing that; I’m not melted cheese, am I?”
Red and I slept together after watching ‘Trainspotting 2.’ At the time, the decision to spontaneously copulate after seeing the film did not seem bizarre. Red is married, and although I don’t think of myself as a terrible person, I struggle with understanding why I don’t regret sleeping with a married man. I am impulsive, paranoid, have been called insensitive to others, and I find it difficult to maintain relationships. I am unsure of my own identity. I experience bouts of euphoria, and intermittent periods of dysphoria my mind conceals with bad puns. I too, like Phineas Gage, have witzelsucht. But it’s not very funny.
One of the most bizarre things about epilepsy is how it led me to become a published horror writer and poet. Since epilepsy is a disorder which causes abnormal electrical impulses, resulting in seizures and altered, behavior, sensation, and awareness, many experts have said people with epilepsy are often more creative. Epilepsy can often be both a blessing and a curse. On one hand, I cannot switch off my brain – I am always thinking, always planning, always overdoing things to the point of exhaustion. On the other, I am highly imaginative, and having epilepsy often gives me strange, otherworldly, unique ideas, and a different outlook of the world around me. I have a terrible memory when it comes to phone numbers, street numbers, times, and dates. Yet I remember everything I’ve ever read, and the lyrics to every song I’ve ever heard, even if I’ve only heard it once.
Some days my mind is filled with thoughts I must write down on anything I can find – paper, napkins, and even my skin. If I can’t write it down, I feel physically sick, and itchy, like there’s something trapped inside me trying to claw its way out. I suppose that’s why I write about body horror, and bugs crawling out of people’s skin. Initially, I took Carbamazepine for fourteen years, however I’ve recently changed to Lamotrigine, which neurologists say side-effects of obsessive creativity is due to ‘forced normalization’ because of specific anticonvulsants. Forced normalization also means I occasionally experience bouts of psychosis, which usually affects my anger. Anticonvulsants like Lamotrigine are not selective, and so they also affect the behavior of the temporal lobe. And while this is often distressing, the silver lining comes after I finish writing a story, or a piece of artwork I’ve been working on for months.
I think people have an incorrect idea of epilepsy, and when I describe my life and it’s not what they think, they assume I’m somehow cheating them. ‘What do you mean you can’t get a job?’ they ask. ‘What do you mean you can’t get a license?’ People forget having seizures isn’t all epilepsy is. The medication often exacerbates my memory problems, yet I must take it. While there are still many problems with the health system today, I can’t imagine what it must have been like in the late-70s. It angers me that people still don’t understand why Ian Curtis committed suicide. Often, anti-convulsants and anti-psychotics exacerbate other problems, which is why I connect with Red and Blue more than others. Unfortunately, for Curtis, there was no one else to connect with at the time.
When I say I don’t always think of myself as a human being, I mean it in an anthropological kind of way. I don’t feel completely connected to society. I feel removed, somehow, or something other than what a human is expected to think or feel. Transpersonal anthropology, a subdiscipline of cultural anthropology, is the study of the relationship between altered states of consciousness and culture. While I often have warning signs of seizures, what some term as an ‘aura,’ they are beyond my control. There is no ‘off’ button to switch off my brain. Epilepsy is one of the more severe altered states of consciousness, since you can die from SUDEP (Sudden Unexpected Death in Epilepsy) at any time. I don’t have baths because I am terrified of having a seizure and drowning. I am terrified of slipping over and cracking my head open, suddenly dying and leaving my daughter behind.
Epilepsy is an inconvenient condition. Ian Curtis was incredibly intelligent, even winning a scholarship to a prestigious private school, which he left without graduating. Curtis used to have seizures on stage, which is possibly why he started dancing in a manner that resembled seizures, to hide the real ones. As his seizures worsened, so did his mental state. He hung himself on May 18, 1980. When I listen to ‘Love Will Tear Us Apart,’ I feel both sad and euphoric. I like feeling connected to Ian Curtis, since I rarely feel connected to others around me. I do not always know how to act around people. I become the jellyfish, unsure of how to control my body, overthinking what I should say. I prefer to observe people from a distance instead of interacting with them. And when I do interact with others, I use different faces for different people, further alienating me from society. I am aware of this, yet I have no control over it. I wonder if Red and Blue think humans are strange to them. Why are other people’s bodies fully functioning? Why does their brain work differently to ours? However, despite these thoughts, I understand it is simply an unfair part of the life-cycle of an epileptic. I’ve got the spirit, but lose the feeling.
I might be Phineas Gage. I might be Blue. I might be Ian Curtis. I might be Red. I might be melted cheese. I might be Yellow. I just might be a jellyfish. While I am unsure of many things, I know I must not let go of Isobelle for a job or anything else just to fit in with the world around me. Sometimes I’m not entirely convinced I’m a human being, but I am convinced I am more than my disorder.
11. Turritopsis dohrnii – Onwards.
Confusion in her eyes that says it all.
She's lost control.
And she's clinging to the nearest passer-by,
She's lost control.
‘She’s Lost Control,’ Joy Division.
P.S. – God: (When creating jellyfish). So…how about an evil bag?
P.P.S. – Jellyfish don’t have brains, nor a central nervous system. But they have survived for millions of years. There’s hope for the world yet!
Names have been changed to protect the real identities of ‘Blue,’ ‘Red,’ and ‘Yellow.’ First published online in Disability Intersections magazine, July 2017
Claire Fitzpatrick is a journalist, author, editor, and poet. Her articles “Why Do People Like Horror Movies?”, “Dark Fantasy V Horror: Why Are Their Differences Important? and Which Genre Should You Introduce To Your Children First?” and “Body Horror and The Horror Aesthetic” were all nominated for the 2016 Aurealis Convenors Awards For Excellence. Her short story “Madeline”was included within “Dead Of Night: Best Of Midnight Echo,” which won the 2016 Australian Shadows Awards for Best Edited Work. She lives in Brisbane.